CAUK and our medical board work together to provide as much upto date information for professionals as we can, so they can better support their patients or research goals.
Upto date research news is available via the button below.
In 2017, Angioma Alliance, our sister US cavernoma support organisation published an invaluable and comprehensive source of information about cavernoma for clinicians;
“Guidelines for the Clinical Management of Cerebral Cavernous Malformations: Consensus Recommendations Based on Systemic Literature Review by the Angioma Alliance Scientific Advisory Board”.
The guidelines are available as a PDF below.
Another authoritative publication, from the Mayo Clinic (an Angioma Alliance Centre of Excellence for Cavernoma), is:
Angioma Alliance have created a COVID-19 Registry for people with cavernoma who have been tested positive for COVID-19 in order to determine whether there are any differences between those with cavernoma catching the virus, or its having adverse effects on haemorrhage or other cavernoma symptoms.
Further information can be found on the Angioma Alliance website at:
NIHR CARE Trials
A consortium led by Professor Rustam Al-Shahi Salman (one of CAUK’s medical advisors), with CAUK as the requisite patient organisation, has been awarded £973k from the National Institute of Health Research (NIHR) for a three-year pilot Randomised Controlled Trials (RCT) study.
Its aim is to find out if a full RCT trial is possible to address the commissioned research question, “How effective is treatment (with neurosurgery or stereotactic radiosurgery) versus conservative management in people with symptomatic brain cavernoma?”
This is a vital question to have answered and, in the process, we will also build up a great deal of important information about cavernoma and its incidence and other aspects.
CAUK very much hopes that all clinicians involved with cavernoma patients will be aware of this trial and encourage suitable patients to take part.
Professor Rustam Al-Shahi Salman is very happy to answer questions about this from clinicians.
In order to maintain the highest quality information about cavernoma, CAUK has two Medical Advisors and a Medical Advisory Panel.
- Mr Neil Kitchen, a leading neurosurgeon from the National Hospital for Neurology and Neurosurgery,
- Professor Rustam Al-Shahi Salman (neurologist – University of Edinburgh)
Terms of Reference: To advise the Trustees of CAUK of developments in all aspects of cavernoma.
- Mr Neil Kitchen (neurosurgeon – National Hospital for Neurology and Neurosurgery)
- Professor Rustam Al Shahi Salman (neurologist – University of Edinburgh)
- Dr Jonathan Berg (clinical geneticist –NHS Tayside & Dundee University.)
- Dr Grace Vassallo (paediatric neurologist – Royal Manchester Children’s Hospital)
- Dr Stewart Rust (Neuropsychologist from Royal Manchester Children’s Hospital)
- Lesley Foulkes (a neurovascular nurse from Southampton NHS Trust)